City of Dust

by Anthony DePalma

  Despite the studies’ limitations, they provided a trove of information that helped shape the monitoring and treatment programs. They also kept the medical community alert for negative health trends. The studies constituted an imperfect early warning system, and they helped guide policy makers as they continually assessed the severity of the problem and the adequacy of the response. They also contributed indirectly to the haze of misunderstanding.

  As the fifth anniversary of 9/11 approached in 2006, John Howard urged Dr. Landrigan and the doctors at Mount Sinai to have a major study ready for release. Without such data, getting Washington to pay attention—and eventually provide the money for monitoring and treatment—would be a losing battle. Until that time, Dr. Stephen Levin and Dr. Robin Herbert, a codirector of the trade center program, had produced a limited number of research papers. One of the earliest was a preliminary analysis of the first 250 responders who had come in for monitoring. That 2003 study showed a pattern of respiratory problems, some quite severe, but it was an extremely small sample. A larger study by the Centers for Disease Control and Prevention released in 2004 closely paralleled the earlier Mount Sinai report. Mount Sinai’s doctors authored several other studies and reports within the first five years, but none had yet carried the kind of weight that Howard wanted to bring to the debate.

  As it tried to satisfy Howard’s demand for a substantive report, Mount Sinai was in a most difficult position. It had heroically stepped forward in the early days of the disaster to screen workers when no one else had been willing to do so, relying on its own expertise and limited resources to cobble together a program, even as the number of people who needed the services grew exponentially. By the fifth anniversary, more than 15,000 workers and volunteers had been screened. The clinic also had access to medical data on another 5,000 workers who had gone to other hospitals and clinics in New Jersey, on Long Island and across the nation. Each worker and volunteer had been asked to provide a medical history, to describe how their health had changed since 2001 and to indicate whether they suffered any persistent symptoms. The sample was far from perfect and was clearly slanted toward people with medical issues, while undercounting workers without symptoms who stayed away. The drawbacks were obvious to everyone involved, but so were the potential benefits. Much could be learned from the clinical experience of those workers and volunteers, the biggest and most varied group of ground zero responders receiving medical attention.

  Mount Sinai released its most comprehensive study a few days before the fifth anniversary of the attacks.5 At an elaborate press conference managed by one of the largest commercial public relations companies in New York, Landrigan and Herbert, by now the head of the data collection unit, provided reporters from around the world with the intensely awaited results of their big study. They found that many individuals had suffered severe respiratory distress, which was not surprising. The caustic nature of the dust, and the pulverized concrete it contained, had turned throats and nasal passages cherry red, which made damage to lungs expected. What was surprising was how long the symptoms persisted. Several years after they had finished working on the debris pile, many individuals still were bedeviled by the same lung, throat, and nasal irritations. To determine the extent of the damage, the doctors conducted lung capacity tests. Although there was no pre-9/11 baseline to compare the results to, these tests laid a foundation for future study. They also provided a snapshot into the medical legacy of the dust.

  Landrigan and Herbert explained their study methods at the news conference, being careful to disclose the limitations of their work. Then they delivered a startling statistic. They said that 7 out of 10 of the 9,442 ground zero workers in the study had severe respiratory problems that had persisted far longer than expected. Herbert brought the whole issue into a broader perspective, taking into account all that had happened since 2001. “There should no longer be any doubts about the health effects of the World Trade Center disaster,” she said. “Our patients are sick. Our patients were very, very highly exposed and are likely to suffer health consequences as a result of that for the rest of their lives.” By stating that there no longer should be doubt, she had tacitly conceded that doubts had persisted for as long as had the symptoms of some responders. It was a candid admission of the difficulty that Mount Sinai, the New York congressional delegation, and the responders themselves had faced, because doubts are raised more easily than they can be erased.

  The study made dramatic headlines all over the world, and “seven out of ten” became the favored shorthand way of conveying the severity of the medical threats facing thousands of workers and volunteers. Seven of ten was something that would shake up even the most hardened Republican from the midwest who thought that New Yorkers were money grubbers and malingerers.

  The report successfully focused attention on a potential health problem. “This study, I hope, puts to rest any doubt about what is happening to those who were exposed,” said Senator Clinton. But a careful review of the results suggested that the situation may not have been as dire as “seven of ten” suggested. In a last-minute editing decision before submitting the paper for peer review and eventual publication in Environmental Health Perspectives, Landrigan had combined the most serious respiratory symptoms, such as shortness of breath, with relatively minor common ailments, such as a runny nose, to get to the 70 percent figure. Separately, the figures still represented serious levels of impact. Sixty-two percent of the workers in the study reported persistent upper-respiratory symptoms, typically the sinusitis, nasal dripping, and dry cough that plagued people who worked at ground zero. Those who reported lower-respiratory symptoms, such as shortness of breath, which can be an indicator of a serious and possibly chronic respiratory problem, were just 15 percent of the total. Given the size of the study and the even larger number of responders in the New York region who could have been battling the same symptoms at that time but hadn’t yet been seen by Mount Sinai or included in the analysis, either number warranted attention. But by combining the two in the report and accounting for duplication, Landrigan could say at the big news conference that 70 percent of responders had reported “new or worsened respiratory symptoms.”

  Because Mount Sinai’s findings had become the bible of ground zero health issues, the 70 percent figure would be repeatedly mentioned in the following months and years. It became the catchphrase of the health issues, and it was often misinterpreted and exaggerated by those who did not bother to repeat Landrigan’s full explanation. In my own page 1 article in The New York Times following the news conference, I wrote, “Roughly seventy percent of 10,000 workers tested at Mount Sinai from 2002 to 2004 reported that they had new or substantially worsened respiratory problems.” Others went much farther. “Seventy percent of the ground zero workers suffer from respiratory illnesses,” NBC reported. The front page of the New York Post was expectedly graphic: “Air Sick” was the banner headline. Beneath it lay the heart of the message that came out of Mount Sinai that day. Using the bluntest terms, the Post declared, “Study: 70% of WTC are Deathly Ill.”

  One of the few restrained responses to the new figures came from City Hall, where Mayor Michael Bloomberg expressed reservations about Mount Sinai’s findings. Bloomberg challenged Herbert’s statement about putting an end to doubts by raising some of his own. “I don’t believe that you can say specifically a particular problem came from this particular event,” he told reporters. “There is still much we do not know about the full nature and long-term health effects of the destruction of the World Trade Center.”

  Those doubts notwithstanding, Bloomberg announced at the same news conference a $16 million program to screen and monitor people exposed to the dust. The money would be spread over five years and was expected to provide enough services to take care of up to 6,000 students, residents, and office workers from Lower Manhattan who, until then, had not been part of any screening program. After stating his lingering doubts about the extent of the health impact, Bloomberg acknowledged
that some people had been hurt and did, in fact, need help.

  Mount Sinai clearly had no control over the way either City Hall or the tabloid editors interpreted its data. nor was it unheard of to combine upper- and lower-respiratory symptoms. But neither was doing so standard practice in peer-reviewed medical journals. Scientists disagree all the time. Some independent experts saw no scientific reason for combining the two and felt that they should have been kept apart, as the early versions of the Mount Sinai report had them. Others agreed with Mount Sinai’s way of handling the data. Questions also were raised about selection bias and the reliability of self-reported symptoms. But Landrigan, who oversaw the writing of the report, staunchly defended it, arguing that the last-minute change was the trademark of a fussy writer who continued to edit right up to the moment the piece was submitted. He also maintained that upper-respiratory symptoms such as the runny nose and watery eyes of sinusitis are conditions that could cause prolonged misery for those who had them. He said they often are precursors of more serious lower-airways problems, such as shortness of breath. Moreover, both sets of symptoms had arisen from the same source of exposure, the dust, which justified combining them.

  Nothing in the report suggested that the collection of the data had been manipulated in any way to produce a particular set of results, nor did any critic imply that. In the body of the study, and in the Environmental Health Perspectives article, Mount Sinai doctors clearly distinguished upper-respiratory symptoms from lower-respiratory ones and made no attempt to gloss over the difference. But in the summary of the article, in their presentation to reporters, and in the press release issued by the Howard Rubenstein Public Relations agency on behalf of Mount Sinai, the distinctions were lost.

  Howard, who had urged that the study be done, was not at all disturbed by the way the findings were presented. “I was surprised they didn’t say that 100 percent of the people have x, y or z,” he once commented. As someone who had suffered severe sinusitis all his life, he sympathized with the idea of combining upper- and lower-respiratory symptoms. And he firmly believed that runny noses and watery eyes that develop simply because someone goes to work the way the responders did ought to be viewed as an important public health issue. He said it is not unreasonable for employees to expect to return from their jobs without being made sick by the work they do. But Howard also knew he couldn’t go to the Bush administration asking for millions of dollars for 9/11 health programs on the basis of a study that said workers had runny noses. Including the lower-respiratory ailments was important for making the point to Congress and the White House. He said he expected that, over time, Mount Sinai would be able to refine its studies, establish strong baseline health data, begin to narrow down chronic symptoms, and catch early signs of a rise in life-threatening illnesses.

  Other physicians and scientists were less understanding, and they expressed concerns that by presenting the results in an unclear way to an overly anxious cadre of reporters, who then further minimized the differences and exaggerated the seriousness of the symptoms, Mount Sinai had made its case stronger than it actually was. There was no suggestion of venality, or willful distortion of data. But given the importance of the study and the manner in which the results could only have been expected to be interpreted, combining the two to come up with the larger, more attention-getting figure invited overstatement at a time when precision and restraint were most needed.

  However, from the perspective of forcing Washington to pay attention, the study succeeded. The reality of occupational illness is that there is often a need to act before all the evidence is in. Doing so gives medicine a fighting chance of aiding the workers who are already sick, not just those who might become sick in the distant future, when long-term epidemiological studies can be neatly wrapped up. Mount Sinai was caught in a vicious scientific Catch-22. It believed that ground zero represented a growing public health threat, yet it could not direct the attention of skeptical government officials to the plight of the sick responders until it had ample proof. And it couldn’t make a convincing presentation of evidence until it had sufficient funds for the screening, monitoring, and treatment programs. Something needed to break the log jam. In many ways, Mount Sinai’s 2006 study did that, despite the questions it raised in some quarters.

  Since that report was issued, Mount Sinai has gone on to do precisely what Howard predicted it would do. Taking the results of that report as a starting point, Mount Sinai’s doctors have continued to refine their message, building on the information they have collected through their clinical work to come up with a more comprehensive and finely tuned sense of the dust’s legacy. In more recent studies, it found that the rate of asthma among the 20,000 ground zero responders who had been screened between 2002 and 2007 was twice as high as in the general population.6 Up to 8 percent of the uniformed services and construction workers reported an asthma attack after September 11. The average rate for adult asthma in the United States is about 4 percent.

  And in a disturbing, though admittedly limited, piece of research, Mount Sinai reported in 2009 that it had found a higher than expected number of cases of multiple myeloma in responders who were younger than 45.7 In the entire population of more than 28,000 workers and volunteers in the screening program by then, doctors detected eight cases of myeloma. That is higher than the 6.8 that would have been expected in a group that size. Mount Sinai said the finding was significant because four of those cases of myeloma had occurred in men younger than 45. The disease most often strikes people who are decades older. Three of the four were law enforcement officers who had arrived at the trade center on September 11 and were exposed to the heaviest concentration of dust. The doctors also noted that the latency period for these cases was significantly shorter than expected for myelomas in people exposed to environmental hazards. In particular, they pointed out that the latency period for multiple myeloma linked to benzene and other solvents ranged from 10 to 20 years in several peer-reviewed studies done at other institutions.

  When the “case series” was released to the public, Landrigan and Dr. Jacqueline Moline of Mount Sinai cautioned that it was an extremely limited number of cases and urged people not to overreact. But they said the results were so striking that they felt compelled to alert doctors throughout the region to be on the lookout for multiple myeloma in any responders they might treat. “Although it is too early to say whether the risk of multiple myeloma is truly increased among WTC responders, we felt it is important to report these cases, particularly because multiple myeloma is unusual in individuals younger than 45 years,” they stated.

  But Mount Sinai’s findings, and their release to the public, again were questioned. The myeloma study included such a small number of cases that it couldn’t be considered conclusive in any way, as Landrigan and Moline had cautioned. But one of the four highlighted responders younger than 45 was identified as not having undergone any examination by Mount Sinai’s medical monitoring and treatment program. He had gotten in touch with one of the program’s doctors in spring 2007, nearly three years after his myeloma had been diagnosed, and was subsequently enrolled. Two other cases were added in June 2007, years after their diseases had been diagnosed. Some epidemiologists and statisticians consider adding cases like this an unacceptable violation of scientific standards. And the four myeloma cases in responders older than 45 was actually less than the 5.6 that statistically would have been expected in this group.

  While Mount Sinai’s forward-thinking advocacy can keep the medical community on top of newly emerging diseases, it also shows the dangers of aggressive advocacy. Despite Landrigan’s efforts to be precise about the limitations of the myeloma report, those reservations were not always incorporated into the message the public received. The Daily News again was out front, and in an editorial days after the myeloma report was released, the newspaper proclaimed in its headline that Mount Sinai had found the first proof of the higher cancer rates that many had dreaded (and that Herbert had years earlier p
ublicly speculated could be “a third wave” of ground zero diseases). The headline was “New Horror for Heroes,” confirming what thousands of workers had suspected about cancer all along. While the case studies are likely to achieve Mount Sinai’s stated goal of warning clinicians about a possible threat, their immediate impact was to create greater stress and more anxiety for the thousands of responders and their families, who feared the worst.

  Despite such controversies, Mount Sinai’s most basic findings and conclusions were being corroborated by Prezant and the city’s Department of Health and Mental Hygiene, which analyzed the medical information collected by the World Trade Center Health Registry. Their individual studies focused on different groups, but their results, like Mount Sinai’s, held that the most harmful exposures had occurred during the first few days after the towers crumpled into themselves.

  The world trade center screening program continued to face challenges. New participants kept signing up, making it difficult to define the size of the study population. Mount Sinai and the other hospitals in the consortium still had to fight for permanent funding to last the decades-long lifespan of the monitoring program. Despite those obstacles and the obvious weaknesses, the clinical data Landrigan’s crew collected remains an invaluable source for understanding the aftermath of the dust.

  Science itself was challenged after 9/11, so deep were suspicions planted in the first fearful days of the response. As details grew ever more complicated, even the most basic facts were undermined by doubt, the most noble intentions weakened by skepticism, the most tragic of times undercut by confounding evidence.